DISABILITY AND HIV&AIDS: By Martin Mwesigwa Babu Programme Manager HIV&AIDS, NUDIPU ACCESSIBILITY TO HIV&AIDS SERVICES BY PWDS IN UGANDA. A collaborative study between ……. National Union of Disabled Persons of Uganda (NUDIPU) & AIDS Information Centre (AIC Uganda.

PRESENTATTION SUMMARY 1.Study Background 2.Overview of HIV&AIDS in Uganda 3.NUDIPUs HIV&AIDS Programme 4.Partnership Strategy 5.Study findings 6.Benefits of the partnerships with AIC for PWDs 7.Recommendations 8.Conclusion 5/29/20142

Study Background 16% disability rate (UNHS, 09/10) approx. 5.12M PWD currently. Disability, HIV/AIDS, and Reproductive health problems still significant in Uganda. Current HIV prevalence in general popn- approx. 6.7% PWDs vulnerable to HIV infection ( NUDIPU, 2004, ADD study, 2005 ) due to: o Endemic poverty o Discrimination o General stigmatization o Sexual abuse (Esp women with physical and mental disabilities) 5/29/20143

The correlation between poverty and HIV&AIDS in Uganda is very significant. Persons with disabilities in Uganda constitute of the poorest of the poor. The drivers of the epidemic in Uganda include poverty, stigma and discriminations, lack of information and awareness about HIV&AIDS, powerlessness in decision making and consent to sex by women with disabilities Lack of data and statistics on disability and HIV&AIDS, which results into absence of informed planning for PWDs in relation to HIV&AIDS. All the above paints a dire picture for people with disabilities because all the drivers of the pandemic mentioned above are evident and resident in the population of PWDs 5/29/20144 Disability, HIV&AIDS in Uganda

5/29/20145 It is with this background in mind that NUDIPU with support from our development partners Disabled Peoples Organization Denmark (DPOD) incepted a programme on Disability and HIV which has been running for the last 6 years. The two phased programme was initiated on a pilot basis in 3 districts of Uganda from 2006 – 2009, and later extended in the second phase to cover 14 districts To-date the programme is being implemented in 14 districts of Uganda including Masaka, Kiboga and Mpigi (Central); Gulu, Kitgum, Pader, Amuru, Lamwo, Agago (Northern); Kasese, Bushenyi, Rukungiri (Western); Jinja and Soroti (Eastern). NUDIPUs HIV&AIDS PROGRAMME

5/29/20146 MAP OF UGANDA GULU KITGUM AMURU SOROTI KIBOGA MPIGI MASAKA BUSHENYI RUKUNGIRI KASESE JINJA

5/29/20147 The programmes major strategy has been PARTNERSHIPS with various stakeholders ranging from government (national and local), HIV&AIDS service providers, Disabled Peoples Organizations, and the community leaders, elders and faith based organizations. WHY PARTERNERSHIP? Two major reasons: 1.HIV&AIDS is a very challenging subject that encompasses both professional intensive aspects and social development skills. 2.NUDIPU – as a Disabled Peoples Organization does not have the requisite professional skills needed to provide HIV&AIDS services. Its mandate is mainly lobbying and advocacy for inclusion of disability issues and needs into national developments policies and programmes. Working with ASOs is therefore fundamental the for the achievement of the development goal of the programme. PARTNERSHIP STRATEGY

5/29/20148 In 2010, NUDIPU and AIDS Information Centre with support from United Nations Food and Population activities (UNFPA) undertook a study whose objectives was: 1.Assess Service Accessibility for PWDs at HIV&AIDS and SRH Service outlets in selected districts of Uganda. 2.Establish existence of policies on PWDs in SRH and HIV/AIDS service delivery institutions. 3.Determine knowledge of service providers about disability and how to handle disability issues and needs 4.Packaging of information: is it user friendly to PWDs? 5.Assess attitudes of service providers about PWDs with regards to access to the services 6.Provide a learning platform for a major HIV service organisation about PWDs and access to HIV services PARTNERSHIP WITH AIDS SERVICE ORGANIZATIONS (ASOs) - AIC

5/29/20149 Field research done in November 2010 Study Areas: Mubende, Oyam and Moroto districts 2 Hospitals, 2 HC IV; 12 HC III; 4 HC II; 1 clinic = 21 Consultations with: Service providers PWDs (46 in communities; 9 exit interviews) Key informants (District and National level) Community members (FGDs ) Data collection methods Desk Review Personal Interviews Focus Group Discussions (6 FGDs) Client exit survey Health facility (observation) survey APPROACH & METHODOLGY

5/29/ The following key aspects were established: 1.Uganda has a very rich legal and policy environment favorable for PWDs i.e. Uganda ratified the UN CRPD in Constitution provides for equal opportunities 2006 Disability Act 2005 Disability Policy National HIV & AIDS Strategic Plan 2007/8 –2011/12 provides for PWD issues 2004 National Adolescent Health Policy where adolescents with mental and physical disabilities are key priority group Health Sector Strategic Plan, with emphasis on rehabilitative health for PWD but little on direct service accessibility. KEY FINDINGS ON POLICY ENVIRONMENT

5/29/ Despite the existence of enabling policy framework at national level, there still exists the major challenge of poor dissemination, implementation and enforcement of the key policies with regards to provision of health and HIV&AIDS related services to PWDs Policies are only on paper. For example, while sign language is recognized in the constitution, government does not pay for interpreters for deaf people even in health facilities. If you say health is for all, and then you do not interpret for the deaf, how will they communicate with the health service provider? (KI, UNAD) Key Findings

5/29/ Disability issues are not effectively not mainstreamed in District Strategic Plans and Health Facility work plans: Egalitarian philosophy assumed …. In our approach, we treat everyone that comes here regardless of their physical state (Health Personnel, Nadunget Health Centre III, Moroto District). All I know is that HIV/AIDS is an integral aspect in our work plans and we target the entire community regardless of how they appear – lame or not lame (Health Personnel, Moroto Hospital). Implication: Unique needs of PWD access to SRH/HIV/AIDS not paid attention to though provided for in national policy frameworks. Key Findings on Policy Framework

5/29/ Government designs for building health infrastructure require PWD provisions such as ramps – But of consciousness among constructors and health service managers and providers about the importance of this is lacking 2.In some cases provisions do exist but not in use, due to poor construction Findings on Accessibility to Service delivery points An example of a poorly constructed ramp at a Health Centre in Mpigi District

5/29/ A pathway to a Latrine at one of the Health Centres in Mubende District Findings on Accessibility to Service delivery points

5/29/ Findings on Accessibility to Service delivery points A common site in most health centres we visited during the study.

5/29/ Perception of PWDs towards appropriateness of physical infrastructure

5/29/ Availability of trained health service providers to handle PWDs No health facility had service providers specially trained or oriented in handling PWDs. Lack of specialized counselors with a bias in disability issues Rehabilitative staff (Orthopedic technicians, psychiatric nurses, physiotherapists) exist in higher level facilities (HCIV & Hospital) Lack of skills in sign language and other modes of alternative communication All the above were lacking despite the existence of policy provisions for the same at national level.

5/29/ Service provider attitudes towards PWDs who seek services Health workers acknowledge right of PWD to SRH services Issue is not so much about negative attitudes but: o Lack of skills and appropriate facilities o Insensitivity: Failure to appreciate that PWDs are special needs people who require special attention: this is sometimes reflected in Health Workers impatience, rudeness towards PWDs Mishandling of PWD most prevalent in maternity services The nurse (midwife) tells you to climb a bed and yet she sees you are disabled. If you hesitate, they will ask you how you climbed the bed to have sex and conceive…(KI, UNAD) Many people show sympathy/pity for PWDs but in the process unconsciously stigmatize or exclude them

5/29/ Do PWDs feel that they are discriminated by health workers?

5/29/ Availability of PWD friendly packaged information at Health, HIV and SRH service provision points Ministry of Health facilities did not provide information in alternative formats, i.e. Braile, large format, No captions on information in mass media e.g. TV Alternative communication for PWD considered expensive by both private and government institutions. e.g. Braille and other appropriate formats Sign language interpreters not usually employed or available for BCC/IEC Most materials displayed at health facilities; excludes those who rarely come to health facilities. We never found any IEC material depicting a PWD.

5/29/ Observations Ministry of Health facilities do not provide services for PWDs despite an enabling policy and legal framework at national level Lack of deliberate strategies to target PWD with services at service delivery level Geographical and physical barriers remain a key constraint to PWDs access to existing services. Severe communication gaps both at service provider level and general IEC/BCC on SRH/HIV/AIDS Insensitivity among health service providers towards issues and needs of PWD discourages utilization of services Weak networking/linkages between government and CSOs in the area of disability

5/29/ Recommendations Collect and collate data on disability and HIV&IADS and PWDs health status. (to facilitate effective advocacy, programming and targeting of services). Scale up advocacy for dissemination and enforcement of policies for PWDs e.g. the use of alternative communication on SRH and HIV/AIDS. Develop communication and advocacy strategy on increasing access to SRH and HIV/AIDS services for PWD (government and key health services providers) Train health personnel to assist with unique needs of PWD at key service delivery points. Best practice-TASO already trying it out Strengthen monitoring and supervision at service delivery level to ensure that Article 25 of the CRPD is achieved. Include a disability module in the training curricula for health workers at all levels

5/29/ Benefits of the Partnership Study The following benefits are expected in the medium term as a result of the study: This is a learning opportunity for a major ASO such as AIC on how to effectively serve PWDs in their programmes AICs example shall influence other ASOs to mainstream disability issues in their programmes. One of the examples so far is TASO Influence national health programmes to be disability responsive Promote Article 25 of the CRPD on Access to health at national and local health programming Improvement in health infrastructure for better accessibility Better opportunities and improved livelihoods for PWDs The list is endless.

5/29/ Concluding Remarks Ladies and gentlemen, HIV&AIDS is a very big impediment to social and economic development all over the world. The developing south has had a fair share of its consequences as we all know. PWDs have for long time not been given due attention in various aspects of development, from education, access to health, and all the attendant support systems necessary for equitable growth and development like their non-disabled counterparts. It is not enough to talk about human rights, without seriously addressing the health and livelihoods of people with disabilities in developing countries such as Uganda. It is now the time to generate critical thinking about the needs of this section of the population in regards to access to health, HIV&AIDS and SRH services.

5/29/ Acknowledgements I wish to acknowledge the support of the following organizations and individuals: UNFPA, Uganda Country Office AIDS Information Centre Makerere Institute of Social Research Dr. Denis Muhangi (PhD) N. Asingwire J. Twikirize

5/29/ END Thank you